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Majority of people with hemophilia in India remain undiagnosed

New Delhi, 21st April 2018: According to Hemophilia Federation India, there are about 19,858 people with Hemophilia in India. Of these, about 80% have Hemophilia A, 12% have Hemophilia B, and about 3% suffer from von Willebrand disease (VWD).Most people with this condition are undiagnosed in the country and lack access to care. There is a need to raise awareness about Hemophilia among people.

Hemophilia is an inherited disorder of blood clotting. There are substances called clotting factors in the blood, which mix with blood cells to make clots causing the bleeding to stop. People with hemophilia are deficient in these clotting factors.

Speaking about this, Padma Shri Awardee Dr K K Aggarwal, President Heart Care Foundation of India (HCFI),said, “Females are carriers of hemophilia. It is not a life-threatening disorder unless the bleeding extends into a vital organ. However, it can be severely debilitating and there is no known cure for this disorder. About a third of new cases are caused due to a new mutation of the gene in the mother or the child. In cases where the mother is a carrier and the father does not have the disorder, there is a 50% chance of the male child having hemophilia and 50% chance of the female child being a carrier.One should see a doctor in case the following symptoms show up: a severe headache, repeated vomiting, neck pain, blurred or doubled vision, extreme sleepiness, and continuous bleeding from an injury.”

Hemophilia is of three types: A, B, and C and the difference between the three lies in the deficiency of a specific factor.

Adding further, Dr Aggarwal, who is also the Group Editor of IJCP, said, “The primary treatment for hemophilia is called factor replacement therapy. In this, the deficient factor is replaced by concentrates of clotting factor VIII (for hemophilia A) or clotting factor IX (for hemophilia B). These can be collected and purified from blood plasma or produced artificially in a laboratory (recombinant). They are given to the patient as an injection through a vein (intravenous) directly into the blood.”

Some tips from HCFI

Hemophilia can be managed by following certain lifestyle tips. • Adequate physical activity can help maintain body weight and improve muscle and bone strength. However, avoid physical activity that can cause injury and resultant bleeding. • Avoid blood-thinning medication such as warfarin and heparin. It is also better to avoid over-the-counter medicines like aspirin and ibuprofen. • Clean your teeth and gums thoroughly. Get tips from your dentist on how to do this without making the gums bleed. • Get tested regularly for blood infections and get your doctor’s advice on hepatitis A and B vaccinations.